New Alzheimer’s Prevention Registry recruiting 250,000 volunteers

March 28, 2013

People who have been touched by Alzheimer’s—in a parent, partner, grandparent, or friend—know the challenges and sadness of this devastating disease. Many also wish to take action in the fight against the disease. Now, a new initiative offers a way for this group of family members, friends, and others to help combat Alzheimer’s in a direct and meaningful way.

The Alzheimer’s Prevention Registry (www.endalznow.org), launched in October 2012 by the Banner Alzheimer’s Institute, is a new online community of people who want to help scientists find treatments to slow, halt, or prevent the memory-robbing disorder.

Like the innovative Army of Women initiative launched by the Dr. Susan Love Research Foundation to invigorate breast cancer research, the Alzheimer’s Prevention Registry hopes to engage thousands of people across the United States who want to learn about and possibly participate in medical research studies about Alzheimer’s prevention. Ultimately, Banner and its partners hope to enroll 250,000 people in the Registry by June 2015.

“We are heading into a new phase of Alzheimer’s research, and we will need thousands of volunteers to test treatments to prevent the disease,” says Dr. Laurie Ryan, director of NIA’s Alzheimer’s Clinical Trials Program. “The Registry should help connect researchers to a community of people who are passionate about combatting Alzheimer’s.”

The Alzheimer’s Prevention Registry is a shared resource that draws on the support of the Geoffrey Beene Gives Back Alzheimer's Initiative and Alzheimer's Research Forum. The Phoenix, Arizona-based Banner Alzheimer’s Institute, one of 27 NIA-funded Alzheimer’s Disease Centers, is a key partner in the Alzheimer’s Prevention Initiative, an international collaboration funded in part by NIA that will test treatments in people at high genetic risk for Alzheimer’s.

A growing community

Just six months in, more than 9,300 members have already joined the effort. Most are cognitively normal adults age 50 or older—the Registry’s target population— and 60 percent report a family history of Alzheimer’s disease, says Dr. Jessica Langbaum, a principal scientist at Banner.

“Enrollees see Alzheimer’s as a significant health issue and believe more must be done to stop it,” she says.

Anyone 18 and older can join the Registry by providing basic information and answering a few questions about their cognitive health, family history, and caregiving status. The Registry will then serve as a go-between, assessing trials submitted by researchers for inclusion in the Registry and e-mailing enrollees about studies for which they might qualify. All personal information submitted by volunteers remains private and will be used only to inform a registrant about research studies of possible interest. Registry members are under no obligation to participate in any clinical trials or studies.

Registry members will also receive regular updates about Alzheimer’s prevention research and clinical trials, as well as information about brain health. In addition to its website, the Registry is spreading the word about Alzheimer’s prevention research through Facebook and Twitter.

Tackling the recruitment challenge

More than 300 Alzheimer’s-related clinical trials and studies are actively recruiting in the United States, each looking for anywhere from a few dozen to a few thousand participants. Typically, a trial must screen 10 or more people for each one who actually enrolls, a process that may take a few months to a year or more. The Registry aims to speed up that process by creating a ready-made pool of thousands of potential volunteers.

Dr. Langbaum explains that the Registry complements local recruitment efforts such as advertising and brochures. “Local recruitment efforts will still be very important. The Registry is not meant to replace them,” she says.

Prevention trials on the horizon

The Registry comes as scientists are gearing up for clinical trials that will test drugs and other promising treatments to prevent dementia. New trials will focus on “preclinical or asymptomatic” populations—people with Alzheimer’s-related brain changes who have no memory loss or other symptoms of the disease.

Many researchers believe that possible therapies may be successful if given early in the disease process, before the onset of memory and other thinking problems. Past trials in people who already have Alzheimer’s dementia have had disappointing results.

The first clinical trial to benefit from the Registry will be the NIA-sponsored A4 (Anti-Amyloid Treatment in Asymptomatic Alzheimer’s Disease) Trial, which expects to begin recruitment in late 2013. It will test the drug solanezumab in 1,000 symptom-free older volunteers whose brain imaging results show abnormal levels of amyloid, a protein whose sticky deposits are a hallmark of Alzheimer’s. Cognitive tests given over 3 years will determine if the drug helps maintain cognitive health, and imaging tests will track structural and functional brain changes.